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ISCoS Florence Italy - October 21-24 2009

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  • ISCoS Florence Italy - October 21-24 2009

    http://www.iscos2009.com/Pages/Florence.html

    Any going there?
    Last edited by Leif; 02-14-2009, 02:40 PM.

  • #2
    Originally posted by Leif View Post
    I will be there. Wise.

    Comment


    • #3
      I will be there too.
      In God we trust; all others bring data. - Edwards Deming

      Comment


      • #4
        How great! Me too. Paolo and Wise, you are in trouble

        Very much looking forward to see you both.

        Comment


        • #5
          Originally posted by Leif View Post
          How great! Me too. Paolo and Wise, you are in trouble

          Very much looking forward to see you both.
          That would be great. Wise.

          Comment


          • #6
            Originally posted by Wise Young View Post
            That would be great. Wise.
            Dr. Young,

            This week I'll be at the conference in Brescia.

            http://www.studioprogress.it/spinalc.../programma.htm

            I'll be there friday and saturday, I hope to meet you there.

            Paolo
            In God we trust; all others bring data. - Edwards Deming

            Comment


            • #7
              Originally posted by paolocipolla View Post
              Dr. Young,

              This week I'll be at the conference in Brescia.

              http://www.studioprogress.it/spinalc.../programma.htm

              I'll be there friday and saturday, I hope to meet you there.

              Paolo
              Paolo,

              I will be arriving in Milano Malpenza at 8:55 am on Thurs (CO44) 19 Feb. and going straight to Brescia. I will be leaving 10:25 am on Sunday from MXP. I am looking forward to seeing you.

              Wise.

              Comment


              • #8
                Originally posted by paolocipolla View Post
                I will be there too.
                Paolo,

                In Florence Italy in October 09, let say some goes there (let plan ahead).

                Some questions then could be: What should SCIed there in Florence focus on (aside of typical ISCoS bowel and bladder issues) if say, getting an hour or two speaking time? SCI regenerative discussions with a panel of researchers, yes? But, what to discuss? EU fp research funds (EU big frames as for research if some has good ideas) and funding for sure… like that itself does not require not only academia, but also academia collaborative lab’s collaborating with private companies and inter-collaborations (countries), not only within the EU, but links to the US is also good. That will release EU money, and there is plenty of it. Problem is, lab’s in countries in EU has to collaborate with other labs, then also to collaborate with private companies. EU wants some motor before letting out funding and grants.

                But I think it will be very difficult to get “regenerative SCI” discussions there (ISCoS)” at the table. And regardless panel debates and “workshops” if “we” don’t have scientists there understanding the call, it will go down the... Good thing though I understand Dr. Young will be there. A very good thing, to have a scientist there likes Young. -Paolo, tell the organizers wee need at least 2 hrs in one session where SCIed will speak and communicate.

                Do not misunderstand me as for ISCoS: Rehab, medications, and new ways for all this is important and probably a good thing, but I feel the ISCoS despite their name do not cower all aspects of SCIed ppl as for what they would want by such an organisation as ISCoS. Normally as for SCI I guess one work in three steps; prevention, rehab and research -to fix. ISCoS do not focus on prevention or focusing on curative treatments as I see it. Just look at previous programmes. -Research on SCI for curing chronics is like it does not exist.

                So -How would one change that, a little, so that a few ppl with SCI and other SCIed could get some speaking time there and start some discussions and have some to say, on real SCI premises issues, -I dunno?

                You’re job to fix that Paolo

                Comment


                • #9
                  I have asked for a few hrs session in the central part of the meeting. I agree with your points. If I get a positive answer then we can plan what to make of it, if not we'll need a more aggressive approach!

                  I hope in a few days to have an answer.

                  Paolo
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                  • #10
                    Today I have received an email from Dr. Sergio Aito who is responsible of the ISCOS meeting.
                    First he wanted to clarify that ISCOS pays attention to prevention as much as cure SCI.
                    In Florence a day will be dedicated to prevention of SCI ad there will be also a symposia dedicated to cure chronic SCI.
                    He agrees to organize a 2 hrs session where people with SCI are protagonist, but he is wondering what to do and who has to take part at this session.
                    From my point of view the title of the session could be:

                    What needs to be done to accelerate the cure process? Who has to do what?

                    People with SCI, researchers, doctors “cure oriented”, foundations that support SCI research and politics should participate to this session.
                    Now I think that we need first to agree with what should be discussed (like the general issue I have suggested) in this session and then set up a draft more detailed of the session so that I can send it to Dr Sergio Aito.

                    Here I think we have a good chance to play an active role, let’s take advantage of this opportunity.

                    Paolo
                    Last edited by paolocipolla; 03-02-2009, 04:12 PM.
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                    • #11
                      Originally posted by paolocipolla View Post
                      Today I have received an email from Dr. Sergio Aito who is responsible of the ISCOS meeting.
                      First he wanted to clarify that ISCOS pays attention to prevention as much as cure SCI.
                      In Florence a day will be dedicated to prevention of SCI ad there will be also a symposia dedicated to cure chronic SCI.
                      He agrees to organize a 2 hrs session where people with SCI are protagonist, but he is wondering what to do and who has to take part at this session.
                      From my point of view the title of the session could be:

                      What needs to be done to accelerate the cure process? Who has to do what?

                      People with SCI, researchers, doctors “cure oriented”, foundations that support SCI research and politics should participate to this session.
                      Now I think that we need first to agree with what should be discussed (like the general issue I have suggested) in this session and then set up a draft more detailed of the session so that I can send it to Dr Sergio Aito.

                      Here I think we have a good chance to play an active role, let’s take advantage of this opportunity.

                      Paolo
                      Paolo,

                      Thanks for all the you are doing. I have talked to a number of people here and I think that there will be some Americans in wheelchairs who will come to support the group in Firenze (Florence).

                      Dr. Alto has already asked me to give a 30-minute talk in the main meeting, reviewing all the therapies that are currently in or planned for clinical trials in the near future. I will do that.

                      What I think would be particularly useful in the session that you are discussing with him are presentations that are directed at the patients and families. There will be doctors of course but they will be very interested in what is said to the families.

                      I found it interesting that several of my colleagues at the Brescia meeting were quite curious as to what I was talking to you, Alexandra, and Arcangela about. They saw us congregating at the meeting. I think that Italian doctors are interested to know what their patients will ask them to do and they will come to that session for that reason alone.

                      If along the way, we present information that convinces both the families and doctors that Italy need to do clinical trials, that is all the better. It is important that we present information that is relevant to at least two kinds of doctors. First, the surgeons will be interested in what role they may play in the cure, i.e. cell transplants, etc. Second, the physiatrists will be interested in what they can do as well, i.e. the need for intensive rehabilitation and exercise after the treatments. Third, the families need to know that there has been much progress in terms of stem cell research and also drugs that block the growth inhibitors.

                      Wise.

                      Comment


                      • #12
                        Great Paolo and Wise.

                        My take on all this.

                        To move Europe closer to a SCI cure I think one need to focus on the basic things and prerequisites required. I also think one has to view all this a bit more grand.

                        I think it is a good idea to talk about therapies in the pipeline, but I think “us” the spinal cord injured has to be more concrete as for what we want and much more demanding. I also think that it is a bit premature to discuss clinical trials network for Europe when Europe almost has none laboratories focusing on therapies for spinal cord injuries and the fact that very few of them even collaborate.

                        Thus, as one argument/demand the following could be presented:

                        As we know the EU Framework Programme ‘FP7’ (Source) has a lot of money. Despite the world financial crisis. This due to the European Commission view research as a big part to aid growth and as for this to find therapies. But, EU is very demanding on how and where they spend funding. To get grants from the FP7 is not just to write a grant request and hope for the best. For example, I was at a conference not long ago and there a cancer researcher (professor) had a lecture on how they got money from EU and the EU FP7. He said one of the crucial issues to get money was to show collaboration with other laboratories, and that private companies was on board. This due to EU demands results from their money spent. So what this cancer researcher from here then did was to first start collaborations with other laboratories on this research idea and research his team was doing, in other countries and with several private companies. This resulted in that this research got adequate funding from EU to move ahead. And now this project shows great advances for cancer treatments as he presented it in his lecture in clinical trials. I have also spoken to a spinal cord injury researcher (professor) from over here, and he also thinks this is the way for the spinal cord injury field in Europe also to get the needed and adequate grants to move ahead. For example he is eager to start collaboration with other laboratories in EU, so far he only has some collaboration with scientists in the US.

                        So by all this I think we should ask for laboratories in the EU to first of all start research on treatments for chronic spinal cord injuries. Then these laboratories should collaborate. And if they collaborate with laboratories say in the US -the better, because that is also possible under the FP7 (Source). The laboratories could do different strategies for finding the cure; some of the labs could work on adult stem cells, some on hESC and some on iPS cells. Some could work on scare issues, some on astrocytes and glial cells, some on immune response and rejection and so on. All done in a coordinated collaboration manner. These labs then should time up with private companies to use their expertise also in this research. This joint venture collaboration of partners then should apply for huge EU FP7 grants for this project.

                        Only by doing this could one move this elephant, I think. It is not good enough with some uncontrolled scattered research here and there, and for sure such scattered research will never attract the huge money required, it will only continue this continuing slow waltz we now see. Thus one should aim high, and go for something I suggested above to present at the ISCoS meeting. Then when this is up and running and contact with the clinics are established one could start to discuss clinical trials which will be the ultimate goal.

                        To achieve all this one should also require/demand that ISCoS set their goals straight to achieve all this. This (ISCoS) is a huge respectable organisation that could have some impact if they really focused on getting all this together. It should be one of their tasks. Patients, families and a few spinal cord injured from all over the world will never be able to achieve this, but ISCoS can, -if they are an organization focusing on important spinal cord injury issues like a cure, that is.

                        The above is just what I think should be an issue presented to the ISCoS board, organizers and participants.

                        Dr. Wise and Paolo (or others). What do you think about this? Could something along this way also be something that should be presented in Firenze?
                        Last edited by Leif; 03-03-2009, 08:48 AM.

                        Comment


                        • #13
                          Leif,

                          I agree with the way you suggest to get the money EU is giving away (often is wasting away). Researchers should establish collaborations with each other and with private companies to meet the requirements to access to EU money. We know there are a lot of money (enough to support the basic research we need) we “just” need to organize our researchers and help them get the money. Since you know that problem well, I would agree if you would give a speech focusing on that.

                          About the need of clinical trials let me explain my point of view with an example:

                          I have a close friend who is ASIA D, if the clinical trial with lithium + UCB works, it may improve the ASIA score by 1 or 2 points and my friend will have a much better life very soon.
                          If we don’t do a clinical trial ASAP she is not going to have this chance soon. So I think you agree that it is imperative to do a clinical trial with lithium+UCB.
                          Consider also that it would be very interesting for researcher to know if lithium + UCB works on humans, so that they may decide which way to go for further investigation that finally will bring us the perfect cure.

                          Consider also Cethrin , phase 1 has given a clear indication that has positive effect on acute injury, but now the trial is not yet going on to phase 2 because there are no money etc.
                          I am sure you would like the clinical trial to go on so that people will benefit of the positive effect it may give.
                          It will also be important for researcher working on basic research to know the effect of cethrin on human spinal cord to help better understanding of the spinal cord.

                          Consider also that clinical trials are very complex to start, so I believe it is important build a “clinical trial culture” among neurosurgeons etc. If not we’ll have soon a pile of therapies waiting to go in clinic.

                          Conclusion: I agree 100% with the need of basic research you talk about and I support your views about the need to organize collaborations to get EU money (EU Framework Programme ‘FP7 etc.)

                          I hope what I said about the need of clinical trials makes sense, and I hope you agree.

                          Last thing, I also agree that ISCOS must set their goals straight to achieve the cure. I think they will listen to what we (people with SCI and families)have to say, but we have to stay on the front line of the battle for the cure always. Consider also that patients and families mast learn first what we know (and possibly more) about the cure process in order to act in an effective way.

                          If we agree on all the above we can move on.

                          Paolo
                          Last edited by paolocipolla; 03-03-2009, 09:22 PM.
                          In God we trust; all others bring data. - Edwards Deming

                          Comment


                          • #14
                            Originally posted by Wise Young View Post
                            Paolo,

                            Thanks for all the you are doing. I have talked to a number of people here and I think that there will be some Americans in wheelchairs who will come to support the group in Firenze (Florence).

                            Dr. Alto has already asked me to give a 30-minute talk in the main meeting, reviewing all the therapies that are currently in or planned for clinical trials in the near future. I will do that.

                            What I think would be particularly useful in the session that you are discussing with him are presentations that are directed at the patients and families. There will be doctors of course but they will be very interested in what is said to the families.

                            I found it interesting that several of my colleagues at the Brescia meeting were quite curious as to what I was talking to you, Alexandra, and Arcangela about. They saw us congregating at the meeting. I think that Italian doctors are interested to know what their patients will ask them to do and they will come to that session for that reason alone.

                            If along the way, we present information that convinces both the families and doctors that Italy need to do clinical trials, that is all the better. It is important that we present information that is relevant to at least two kinds of doctors. First, the surgeons will be interested in what role they may play in the cure, i.e. cell transplants, etc. Second, the physiatrists will be interested in what they can do as well, i.e. the need for intensive rehabilitation and exercise after the treatments. Third, the families need to know that there has been much progress in terms of stem cell research and also drugs that block the growth inhibitors.

                            Wise.
                            Dr. Young,

                            I am convinced that if we can give the right picture of the situation to patients and families, they will ask for clinical trials ASAP. I agree that surgeons and physiatrists must be involved as they will be the key persons in the clinical trials.

                            I think also we should point out that:
                            1)We have many patients paying to go to x-cell center or Beike
                            2)We have therapies ready for clinical trials
                            So if we had a clinical trial for chronics I expect everybody would support it. Patient will join the trial, which is a better choice than paying for unproven and probably useless therapies like the ones x-cell center and beike are aggressively offering here in Europe.

                            Then, do you think if we focus mainly on asking for clinical trial, financing for basic research will then come easily? Or should we ask for both separately?
                            In the last case Leif will do a great job for the basic research alone.

                            Paolo
                            Last edited by paolocipolla; 03-03-2009, 09:30 PM.
                            In God we trust; all others bring data. - Edwards Deming

                            Comment


                            • #15
                              Regarding patients/families - are many expected to attend this conference, or is it primarily for professionals? Paolo, aside from you (& other Italians) and Leif do you think there will be good representation on the patient side? I think that would be needed to help reinforce the arguments you want to put forward in the meeting.
                              Looking at the rest of the conference agenda I wouldn't have too much interest in being there, but for the meeting I'll have a look into whether I could attend. Perhaps others will consider that too.

                              Comment

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